decisions about health and personal care: what does it

+

Decisions about health and personal care: What does it take to be legally capable?

Professor Sheila WildemanSchulich School of LawMINI LAW SCHOOLOctober 23, 2013

+Jenny Hatch(Virginia, US)

+Jenny in her own words

+in her own words

+The Personal is the Political

+ What does it take to be legally capable? (health & personal care)

1. Background principles & values• A “paradigm shift” toward decision-

making supports

2. Legal capacity in NS: health & personal care

3. Substitute decision-making in NS: supportive, responsive, responsible

+Conditions / circumstances may impair decision-making . . .

Dementia(s) / Alzheimer’s Disease

Intellectual disability

Brain injury

Mental health problems / psychosocial disability

Transient trauma / shock

+. . . These are not equivalent to incapacity at law

“Legal capacity” is defined differently across jurisdictions and types of decision

“Legal capacity” reflects political choices

“Legal capacity” reflects our core values as a society, including the relationships we wish to build among family and community members

+What’s in a decision?

+Fundamental values (within limits)

Autonomy / Respect for persons

Equality / Non-discrimination / accommodation / equal concern & respect

Counterweights / LimitsProtection of the vulnerableEfficient & principled use of scarce

resources

+Legal capacity – central principles

The constitutional guarantee of autonomy protects bodily integrity & the right to make decisions of fundamental personal importance

. . . even where those decisions appear risky or foolish.(see Re Koch, cited in Starson v. Swayze 2003 SCC 32).


Presumption of legal capacity (adults)Onus lies on the one challenging capacityRequires evidence to displace legal

presumption

+

Definitions vary across jurisdictions and types of decision

Those empowered to formally assess legal capacity also vary Specialized tribunals, courts, physicians, social

workers, other health professionals . . .

Legal capacity – central principles


Often (& increasingly) recognized as: Decision-specific (treatment, finances,

testamentary, marriage . . .)Time-sensitive (may fluctuate)


Not equivalent to diagnosis, age, I.Q., Mini-mental state score

Not dependent on agreement with professional opinion / advice

+U.N. Convention on the Rights of Persons with Disabilities [CRPD]

Canada ratified March 2010

Wide participatory base in drafting

Speaks to social determinants of disability / marginalization (rights to education, health, work, adequate standard of living)

Relevant to interpreting domestic laws & pressing for reforms

+CRPD, Article 12

Equal recognition before the law

1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.

2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.

+CRPD, Article 12 (cont’d)

3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity. . .

+CRPD, Article 12: Canada’s interpretive declaration

“To the extent Article 12 may be interpreted as requiring the elimination of all substitute decision-making arrangements, Canada reserves the right to continue their use in appropriate circumstances and subject to appropriate and effective safeguards.”

+Article 12: A “Paradigm Shift”

Substitute Decision-making

Supported Decision-making

Lack of internal “capacity” to make one’s own decisions

All decision-making takes place in a framework of supports

Transfer of decision-making authority to another

(Suspicion, Surveillance, Coercion)

Decision-making supports to be tailored to the individual’s needs

(Respectful assistance within a range of meaningful options)

Individual as dependent, passive, absent

Individual as self-directing within a framework of supports

+A “Paradigm Shift”

Instead of restricting autonomy of those who need extra support to comfortably participate in all aspects of life, the CRPD requires states to provide access to such support and to respect the autonomy of all persons with disabilities.

- World Network of Users and Survivors of Psychiatry, Statement on the implications of the CRPD on forced treatment (Mar 14, 2011)

+Political not Metaphysical

+(In)capacity in law: social / human rights model

Ask how social environments and mental conditions interact to produce disability.

Ask how conditions under which capacity is assessed may impair the ability to demonstrate capacity.

Ask how conditions may be altered to support legal capacity.

+Decision-making supports . . .

Individual and context specific . . .Range of meaningful optionsAssistance understanding & exploring optionsFamilial OR peer OR state-provided assistance

Assistance communicating a choiceAlso: crisis intervention, building of relationships of trust vs coercion . . .

+ Wider supports (Social determinants of legal capacity)

Countering employment discrimination (Art 27), poverty (Art 28), homelessness (Art 28), violence (Art. 16)

Accessible, voluntary community supports (Arts 14, 19)

Best practices in crisis intervention, including supportive housing, peer-run shelters (Arts 14, 15, 17 & 19)

Public education about mental health & human rights (Arts 4(1)(h), 8, 21, & 25)

Public deliberation about what constitutes meaningful supports (Arts 4(3), 29) - in different cultural contexts

+Legal Models: Works in Progress

B.C. – Representation Agreement Act Incapacity not to be based on one’s “way of

communicating with others”May appoint trusted person to assist with

decisions or to make decisions in specific areas Capacity to appoint based in expression of

preferences & trust (except where authorizing actions vs. one’s will)

Representative to respect “current wishes” if “reasonable” (unless agreement states otherwise)

+Legal Models: Works in Progress

Personal ombudsperson - PO-Skåne(Sweden) State-funded service / alternative to family

support

Aimed at most isolated, marginalized

Acts only at client’s request

Meets with client in the community, works to establish relationships of trust / communication

Advocates for client’s interests

+2. Legal capacity in NS: health & personal care

Multiple statutory regimes Incompetent Persons ActAdult Protection Act Involuntary Psychiatric Treatment ActHospitals ActPersonal Directives Act Powers of Attorney Act – FINANCES & PROPERTY

ONLY

Also, judge-made law (common law)

+ Incapacity in NS (partial list)Statute Nature of

incapacityAssessor SDM SDMs authority

Incompetent Persons Act

“incapable from infirmity of mind of managing own affairs.”

Court [2 physicians]

Court-appointed guardian

Estate and person

Hospitals Act Treatment in hospital or property decisions

Physician; consult with other health profs

Statutory list

Treatment in hospital or property decisions

Personal Directives Act

Personal care, including health care,continuing care, home care

Physician does formal assessment

Per directive or, if no directive, statutory list

Per directive or, if no directive, statute states the determinative factors

+Incapacity in NS (partial list)Statute Capacity Assessor SDM SDMs

authority

Involuntary Psychiatric Treatment Act

Treatment incapacity required for involuntary hosp or CTO

Psychiatrist;consulting w other health profs

Statutory list

Treatment in psychiatric facility / CTO

Adult Protection Act

Abuse / neglect; mental infirmity or physical disability; & incapacity to decide re offer of services

Court (evidence from AP worker / physician / other health profs)

SDM under Personal Directives Act or court-ordered services

Per Personal Directives Act –if no SDM, court may place limits on Minister’s care plan

Powers of Attorney Act

“Legally incapacitated” from managing estate

Lawyer (possassisted by health prof)

Person granted power of attorney

Property only

+Court-appointed Guardian (Incompetent Persons Act)

S.2(b) “a person, not an infant, who is incapable from infirmity of mind of managing the person's own affairs”.

S.3(4) Guardian has “care and custody of the incompetent person and the management of the incompetent person's estate”.

Global / vague standard of capacity & powers Contrary to guarantees of equality & autonomy

(not to be deprived arbitrarily / disproportionate harm to right)

+Incompetent Persons Act: Critiques of NS Law Reform Commission, 1995

Act does not reflect current social needs or values

Act should require court to consider

the specific kinds of decisions in issue,

the adult’s way of communicating,

available support and resources,

the wishes of the adult, including those expressed in an advance health care directive

Should require least restrictive intervention

Court “should not appoint a guardian unless alternatives, such as providing support and help, have been tried or carefully considered”

+Adult Protection Act

S.3(b) Adult in need of protection

- Subject of abuse / neglect / self-neglect

- Incapable of protecting/caring for self “by reason of permanent physical incapacity or permanent mental incapacity, and refuses or is unable to provide for” own protection / care

If Minister satisfied 3(b) criteria met (and if adult or SDM under Personal Directives Act agrees), “shall assist in obtaining” services (s.7) . . .


9(3) Minister may apply to court for declaration that a person is an adult in need of protection and does not have the mental capacity to decide whether to accept the assistance of the Minister,

The court may, where it appears to be in the best interest of that person, issue one or more of the following orders . . .


Authorizing Minister to refer adult to services including placement in an approved facility

Protective intervention order directed to a person who is a danger to the adult (prohibiting contact, requiring payment of maintenance)

Appoint a temporary guardian for person or estate or both

Issue a supervision order directed to the SDM or any person having care or control of the adult, which may include terms and conditions related to the adult's residence or estate

+Adult Protection Act: Critiques

Incapacity or lack of adequate range of options?

Social / human rights model: exhaust supports before declaring legal incapacity

Least restrictive intervention?

Attention to wishes / values of individual?

+NS Involuntary Psychiatric Treatment Act [IPTA]Criteria for involuntary hospitalization / treatment mental disorder; in need of psychiatric treatment in psychiatric facility; as a result of the mental disorder, has caused or is threatening to cause serious harm to self or

other OR is likely to suffer serious physical impairment or serious

mental deterioration, or both is not suitable for voluntary admission; and

(e) as a result of the mental disorder, the person does not have the capacity to make admission and treatment decisions

+Treatment capacity: NS IPTA

IPTA s.18 (1) the psychiatrist shall consider whether the patient fully understands and appreciates (a) the nature of the condition for which the specific

treatment is proposed; (b) the nature and purpose of the specific treatment; (c) the risks and benefits involved in undergoing the

specific treatment; and (d) the risks and benefits involved in not undergoing the

specific treatment;

(2) . . . whether the patient's mental disorder affects the patient's ability to fully appreciate the consequences of making the treatment decision.

+IPTA

What is expected in order to demonstrate “full” understanding and appreciation?

Discriminatory standard (identical requirements for other persons in NS, except for qualifier “fully”)?

What would it mean to assess this capacity fairly? During 72-hour observation?

+IPTA

Consequences of incapacity under IPTAInvoluntary psychiatric hospitalization

(other terms & conditions apply)Possibly, Community Treatment OrderSubstitute Decision Maker assigned under

the terms of the Act (close family member or, if none, Public Trustee)Have we provided adequate voluntary

supports?

+NS Hospitals Act: treatment capacity

Addresses capacity to make decisions about treatment in hospital (apart from involuntary psychiatric patients)

Physician assesses

If incapacity established, a substitute decision maker [SDM], selected according to a statutory list, decides

SDM must decide in accordance with statute

+ NS Hospitals Act: treatment capacity

S.52 (2A) Does the patient understand and appreciate . . .

(a) the condition for which the specific treatment is proposed;

(b) the nature and purpose of the specific treatment;

(c) the risks and benefits involved in undergoing the specific treatment; and

(d) the risks and benefits involved in not undergoing the specific treatment . . .

+ NS Hospitals Act – treatment capacity

(2B). . . whether the patient's mental disorder affects the patient's ability to appreciate the consequences of making the treatment decision.

45

+Understanding / appreciation? Starson v. Swayze (2003 SCC)

Ability to understand = “the cognitive ability to process, retain and understand the relevant information”

Ability to appreciate = ability “to apply the relevant information to [one’s] circumstances, and . . . to weigh the foreseeable risks and benefits of a decision or lack thereof”

46

+Understanding / appreciation? Starson v. Swayze (2003 SCC)

Failure of understanding / appreciation not necessarily a failure of ability (vs sufficiency of information, transitory circumstances eg sedation)

Disagreement w/ professional about diagnosis or causes of condition is not necessarily incapacity (conflict of values or opinion?)

BUT inability to recognize symptoms / facts about one’s condition or circumstances is a sign of failure to “appreciate”

+Re Crewe 2007 NSSC 322Appeal of assessment under NS Hospitals Act

Declared incapable of decision re proposed surgery

Court invalidated this change in legal status

1) inadequate information imparted to Mr. Crewe

2) emotional impact of diagnosis & proposed surgery

Evidence did not establish inability to understand / appreciate; general testimony about delusional ideation not linked to this decision

48

+ Legal safeguards: Assessing Capacity From Starson (SCC 2003); Re Koch (Ont. Sup.Ct 1997)

Inform re nature / purpose of assessment, right to have trusted person present, right not to participate

Address circumstances that may compromise capacity (emotional / environmental / medical)

Inform: reinforce understanding

Probe: encourage elaboration if response is not understood

Probe: consult corollary sources, consider reassessing at another time

49

+Hospitals Act – substitute decision-maker

(a) a person who has been authorized to give consent under the Medical Consent Act or a delegate authorized under the Personal Directives Act;

(b) the patient's guardian appointed by a court of competent jurisdiction;

(c) the spouse of the patient;

(d) an adult child of the patient;

(e) a parent of the patient;

(f) a person who stands in loco parentis to the patient;

+Hospitals Act – substitute decision-maker

(fa) an adult sibling of the patient;

(fb) a grandparent of the patient;

(fc) an adult grandchild of the patient;

(fd) an adult aunt or uncle of the patient;

(fe) an adult niece or nephew of the patient;

(g) any other adult next of kin of the patient; or

(h) the Public Trustee.

+Hospitals Act – substitute decision-maker (additional criteria for those in clauses c to g)

(a) personal contact with the person over the preceding twelve-month period (except for a spouse) or granted a court order to waive the twelve-month period;

(b) is willing to assume the responsibility for making the decision;

(c) knows of no person of a higher rank in priority who is able and willing to make the decision; and

(d) makes a statement in writing certifying the relationship to the person and the facts and beliefs set out in clauses (a) to (c).

+Personal Directives Act (in force since April 2010)Recognizes advance directives for health care

and other personal care decisions in and beyond hospital

may appoint “delegate” to make personal care decisions & / ormay give specific instructions about personal

care in the event of incapacitymay state one’s “values, beliefs and wishes”

about future personal-care decisions

+Personal Directives Act

s.2(l) “personal care”includes, but is not limited to, health care, nutrition, hydration, shelter, residence, clothing, hygiene, safety, comfort, recreation, social activities, support services . . .

54

+Personal Directives Act: Capacity to make a directive

S.2(a)"capacity" means the ability to understand information that is relevant to the

making of a personal care decision and

appreciate the reasonably foreseeable consequences of a decision or lack of a decision

55


Where no advance directive:Statute authorizes “nearest relative” to make decisions regarding health care placement in a continuing care home home care services

. . . or if no relative able / willing, Public Trustee


Who assesses capacity under the PDA?

- Formal assessment by physician (on request):- “Physician”, not necessarily psychiatrist- Directive may name person w/ whom physician

must consult

57

+

Matters of relevance (partial list?)

Nature of identified problems at home

Difficulties with self-care?

Consistency of situation with values?

Nature of the proposed placement

Risks / benefits of placement

Risks / benefits of refusal

Alternatives (home care, other supports?)

Decision to live with risk?

Understanding / appreciation – e.g., decisions about long term care

+

Probe responses that are confusing / partial – look for the reasons / values that may be guiding choice.

Answer any questions the person may have about the decision.

Adapted from Assessing Capacity for Admission to Long-Term Care Homes- A Training Manual for Evaluators Jeffrey Cole, MSW, RSW; Noreen Dawe, MSW, RSW (2012, revised

2011)

Understanding / appreciation – e.g., decisions about long term care

+Supported decision-making –(common sense?)

Slow down?

Repeat information in a different way?

Meet at a different time of day?

Ask permission to involve a trusted consultant / friend?

“Determining capacity is not a test of prior knowledge”: Duty to inform, confirm understanding, adapt information to meet individual’s needs

Ed Montigny, “Notes on Capacity to Instruct Counsel” (ARCH Disability Law Centre, ON).

+Personal Directives Act: more information (including sample form)

Capital District Health Authority: “Let’s Talk About Personal Directives”

http://www.cdha.nshealth.ca/patientinformation/nshealthnet/1385.pdf


DOES recognize legal capacity is decision-specific

DOES recognize legal effect of prior statement of wishes / values

DOES thereby encourage communication among families, and with care providers, about wishes and values relating to care


DOES NOT state a presumption of capacity

DOES NOT mandate exhausting all means of supporting legal capacity

DOES NOT supply an accessible process for contesting incapacity OR substitute decisions (these challenges require application to a court)

+3. Substitute decisions: legally required considerations

Hospitals Act

The substitute decision-maker shall make the decision in relation to specified medical treatment

(a) in accordance with the patient's prior capable informed expressed wishes unless (i) technological changes or medical advances make the prior

expressed wishes inappropriate in a way that is contrary to the intentions of the patient, or

(ii) circumstances exist that would have caused the patient to set out different instructions had the circumstances been known based on what the substitute decision-maker knows of the values and beliefs of the patient and from any other written or oral instructions;

+Hospitals Act

(b) in the absence of awareness of a prior capable informed expressed wish, in accordance with what the substitute decision-maker believes the wishes of the patient would be based on what the substitute decision-maker knows of the values and beliefs of the patient and from any other written or oral instructions; and

(c) if the substitute decision-maker does not know the wishes, values and beliefs of the patient, in accordance with what the substitute decision-maker believes to be in the best interest of the patient.

+Hospitals Act

Best interests to be determined in light of

(a) whether the condition of the patient will be or is likely to be improved by the specified medical treatment;

(b) whether the condition of the patient will improve or is likely to improve without the specified medical treatment;

(c) whether the anticipated benefit to the patient from the specified medical treatment outweighs the risk of harm to the patient; and

(d) whether the specified medical treatment is the least restrictive and least intrusive treatment that meets the requirements of clauses (a), (b) and (c).

+Personal Directives Act (delegates)

In making any decision, a delegate shall

(a) follow any instructions in a personal directive unless

(i) there were expressions of a contrary wish made subsequently by the maker who had capacity,

(ii) technological changes or medical advances make the instruction inappropriate in a way that is contrary to the intentions of the maker, or

(iii) circumstances exist that would have caused the maker to set out different instructions had the circumstances been known based on what the delegate knows of the values and beliefs of the maker and from any other written or oral instructions;

+Personal Directives Act (delegates)

(b) in the absence of instructions, act according to what the delegate believes the wishes of the maker would be based on what the delegate knows of the values and beliefs of the maker and from any other written or oral instructions; and

(c) where the delegate does not know the wishes, values and beliefs of the maker, make the personal-care decision that the delegate believes would be in the best interests of the maker.

+Personal Directives Act (statutory decision-makers)

A statutory decision-maker shall

(a) act according to what the statutory decision-maker believes the wishes of the person represented would be based on what the statutory decision-maker knows of the values and beliefs of the person represented and from any other written or oral instructions; and

(b) where the statutory decision-maker does not know the wishes, values and beliefs of the person represented, make the personal-care decision that the statutory decision-maker believes would be in the best interests of the person represented.

+Take-aways

ADVOCATE for safeguards & supports to promote legal capacity – recognition in law & policy

PLAN by identifying the emotional, social & material supports you and others require to maintain legal capacity; plan also for last-resort mechanisms for having one’s wishes respected despite incapacity

SUPPORT the decision-making abilities of oneself and others

RESPECT the wishes & values of others through responsible supportive & substitute decision-making

+Reconstruction (with the requisite supports)

+Principles of decisional capacity: further resources

Judith Wahl, “Capacity and Capacity Assessment in Ontario” http://www.practicepro.ca/practice/PDF/Backup_Capacity.pdf

Robert Gordon, “The Emergence of Assisted (Supported) Decision-Making in the Canadian Law of Adult Guardianship and Substitute Decision-Making.” International Journal of Law and Psychiatry Vol 23 (1) 2000

Doug Surtees, “The Evolution of Co-Decision-Making in Saskatchewan” (2010) 73 Sask. L. Rev. 75

+Further resources

Michael Bach & Lana Kerzner, “A New Paradigm for Protecting Autonomy and the Right to Legal Capacity” (Law Commission of Ontario, Oct. 2010), http://www.lco-cdo.org/disabilities/bach-kerzner.pdf.

Sheila Wildeman, “Insight Revisited: A Relational Approach to Supporting and Assessing Persons’ Capacity to Make Treatment Decisions in Involuntary Psychiatric Hospitalization Settings,” in J. Downie & J. Llewellyn, eds., Relational Theory and Health Policy, UBC Press, 2011.

decisions about health and personal care: what does it

Documents